Healing Broken Hearts

brokenheart

I became a diabetic at an age when other girls were becoming young women. I remember returning to the sixth grade after my diagnosis, anxious to be accepted back into “the group” as if nothing had happened. I persisted in giggling with my two best girlfriends, and my supposed boyfriend still passed me notes when the teacher wasn’t looking. What I hoped my friends didn’t sense was that I felt so differently now about the body I was growing into, about what my Sunday School teachers still called my “temple.”

First of all, “the temple” was not just any young girl’s body anymore. No, it was now a body requiring all sorts of paraphernalia in order to function at all: syringes, needles, cotton swabs, and testing supplies. Stuff. I felt possessed by a body encumbered with stuff, and not just the stuff of small-town teenage femininity: mascara, makeup, powder, blush, lip gloss, curlers, suntan lotion, and the like. No, my development was now never to be the so-called “normal” growth into sexuality of my small-town girlfriends. Girls who were already well on the road to marriage and motherhood.

The role of women in those days was to marry. A woman’s job was to be a good wife and a mother. In spite of being a diabetic, I still longed for these roles. I simply didn’t know there were other options. The doctor did frighten me though when he tried to reassure me by remarking that, “Well, if you have children, in order to save them, we’ll just go in early and take them caesarian. Tell your mother not to worry.” Though he must have been trying to give me the impression I could have babies, I did nothing but worry from then on.

In other words, at the onset of diabetes and at the end of my childhood, I began to fear. Medical personnel in general remarked that the babies of diabetics evidently grew quite large.  There was talk in this corner and that, just beyond my good hearing, that there could be serious problems. Like my doctor said, the new discovery was that the babies of diabetic mothers could be saved if they were NOT “let go full term.”

Of course, I had the persistent idea of a bitter past—evidently, the babies could at one time very well have died! (Indeed, when I have since met some diabetic women older than myself, most of them had suffered more than once miscarriage.) My impressions about having children became cemented in fear—not so much for myself as for the child. Clearly, if I tried to have a baby, it would probably die! As for the fact that I might live through it all—I cared not. I’d had a great grandmother who bore eleven babies. Only three had lived to become adults. (In my grandmother’s attic, I even discovered a photo of a baby ready for her tiny coffin!) To me, in short, pregnancy became shadowed by death.

Moreover, it was thought that diabetes was an inherited disease. My mother had claimed responsibility for passing on what the medically educated would now term the “bad gene.” Surely then, I would also pass it on—wouldn’t I?  Then I can remember, when I was nineteen and engaged, being in the university health clinic because I’d had an unfortunate bout of too low blood sugar. A male technician had come to draw blood. We talked. He mentioned this “role of inheritance” about which he’d been reading, and great insensitivity, said something to the effect that if I had diabetes, it was likely that my children would too. My self-confidence plummeted.

Also, hadn’t I read articles about the children of addicts being born addicts? As for addiction, did I not take insulin daily; much like an addict takes drugs? I do not know why I did not discuss my fears in depth with a counselor or even a friend. But then, truth to tell, I never discussed my diabetes. Not with my parents, my sisters, my friends, my boyfriends much, not with anyone. I was so reserved, so proud. I simply did not want and could not accept what I interpreted as pity.  Also oddly, though I was an intelligent and studious woman, I did not research such things in depth, as I obviously should have.

I had learned of the women’s movement, and decided I would not be “trapped too young,” perhaps like my own mother. At least trapped like so many women from my hometown and the whole local area—trapped by early pregnancy. Also, there was a world population problem to consider. Why, I was capable of passing on harm to another, while just adding yet another young person at risk into the world! Even though medicine had advanced since I’d been diagnosed, this still became an all-important motivator for me–I did not want to pass on a disease I hated. No child of mine would have diabetes. No child in the world after me if I had my way.

At any rate, from the beginning of my dating career, I’d begun to feel “not right.” Not what made a good wife anyway. I was damaged goods. Diabetes was a private pain from which I must protect future generations, the world, my friends and family, and my boyfriends in particular. At about thirty, though, I finally accepted the medical advice that I could have a child, that help was available. Meanwhile though, my true love, the potential father suddenly found another, even younger mate. After that, I seemed to be hit with one reason after another for not having a baby myself.

While I worked for years in a corporation, I also learned that if I had a child, I’d need months off to ensure a healthy birth. Furthermore, I’d had a wonderful father, and I still tend to think that a good father in a child’s life is a wonderful thing. Not to mention, I have never wanted just any man as a partner, much less as “the father.”

Yes, I considered adoption. I poured over brochures. Still, no man in my life—not any who wanted children or none who wanted any other than his own, thank you very much. I’d have to do it all alone then. Still, I thought that perhaps as a single mother, a little girl from China might be a good match. I’d heard thousands were filling the orphanages. Of course, the problem then was the cost. Though I worked endless hours, I never seemed to make enough to purchase much of a decent life for myself, not to mention afford the high fees required.

No, I never considered fostering children. Working for state group homes in my younger life, I’d seen the children with whom I’d worked returned to less than desirable parents time and time again. I still am very much the kind of person who becomes attached.

Of course, thanks to the freshness of young people, now virtually every possible sexual condition or problem is being discussed and investigated. There is also now literally more than one way to have a baby. I think overall that innovation has helped overcome a lot of difficulties with pregnancies. All this, I’m afraid came well past the timing of my biological clock.

As to me, I’ve grown somewhat “normal” after all. With the advent of my husband and his children’s children, grandchildren in my life, as well as thanks to my forever closeness to nieces and nephews and their children, my heart, soul and mind are slowly, slowly being healed. I would encourage all diabetics today to give family a try if that’s their “calling” in life. I still resist retirement areas as I think time with all age groups make for a more well-rounded life. Live the life you have to the fullest is what I’ve learned, and do not be ruled by fear, or worse, cynicism. Seek the good always.

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Apple or Pear?

People used to ask me what I would do if I was cured of diabetes, and I used to answer, “Go on a diet.” I became a Type 1 diabetic at age eleven, and I’m afraid onset pretty much coincided with that growing girl concern of the time—that concern over looks and weight. I do want to quickly insert that not all Type 1 diabetics are chunky like the self I have always been. Indeed, this is a difference between Type 1 and 2—Type 1s can have a different overall body type, be thin or wiry, have a very high metabolism. They don’t fit the profile. Unfortunately, I have been more true to the norm, and as far as I know, I have no metabolism.

As long as I can remember, I have always been concerned about my weight. Growing up, the subject of the weekly menu at school became embarrassing as my mother insisted on asking me about all food being offered to me. Eating, itself, became an ordeal. In the diabetic regime of old, growing children like me were given a certain number of calories a day to consume. In the morning, I had to eat eggs in the morning for protein and buttered toast, whether I wanted them or not. Very often, there was also oatmeal with milk and juice or half of a grapefruit. Lunch was another ordeal of huge sandwiches, potatoes and a vegetable, plus a fruit for dessert. And, oh yes, more milk.

Dinner was definitely again too much food—I sat down to ample slices of meat, vegetables, potatoes, plus bread and butter. Then again, there was fruit for dessert. Before bed, I had milk again, most often with crackers and cheese. So much food to me, and I honestly felt as if I was being forced to eat every bite of it. The daily regime was preached over and over to me: take a certain amount of medication, then eat what seemed like way too much, and absolutely eat every single bit of every single meal. More importantly, never skip a meal.

Meanwhile as a teenage girl, I worried constantly about my weight, and yet felt helpless to do anything much about it. Short-acting insulin was not available to the patient in those days, and I know that my blood sugar must have been going up, up, up after any of these heavy meals. I became one college student who didn’t indulge in pizza often—and to this day, I’m often teased as I have a tendency to scrape off the topping, eating it without the crust. Hardly good social etiquette. Also, could I just eat my cheeseburger and forget the bun, please? I suppose I was discovering certain “weight watcher approaches” long before today’s popular diets. Still, I was not learning, at the time, to eat more healthy raw vegetables.

I have a picture of me as a young woman, and although there is not a time when I didn’t think I was too fat, I actually look pretty good to myself now. Still, one photo of me at my lowest adult weight, I do have to admit, now looks skeletal. Though I was more slim and trying to feel good about myself, I remember now what must have been really true—I did not feel well, And still, no really flat stomach for me! Of course, I did sit-ups growing up, long into adulthood, I’m afraid nothing ever made much of a difference in the way my weight apportioned itself. At least we finally learned that some diabetics are more naturally apples than pears, so I could stop beating myself up. Meanwhile, save me to this day from business lunches, which so often include huge croissant sandwiches or pasta dripping in cheese. I spent my twenties seeking out dieticians who handed me 1,000 calorie a day diets—the only diet I could lose weight on. You see, malnutrition was not much of an issue to the women of my time?

I wish I could say that exercise was of interest and pleasant to me. Unfortunately, I’m more the “thinker type” of person. No, it did not help that exercise was often forced on me as a child, though I always liked swimming and biking. (I think I’m simply not the competitive type.)

I’m afraid use of the insulin pump has meant less swimming for me. Yes, it can be detached, but often that detachment is worrisome and bothersome and attempts to make the pump waterproof have improved the models, but not been totally successful. Walking is always what has saved me, but then unfortunately, I broke a kneecap, so that exercise is not totally worry free now, though I do try to persist. I walked everywhere when I was young, as I so often did not have a car, and yes, I do believe that helped my blood sugars and perhaps my weight. I even jogged for quite a few years in my life. I’ve heard nothing beats walking as far as your health goes though. Not to mention, I still enjoy this form of exercise.

Exercise aside, and the insulin management needed with it, I have felt from the time of middle-age on, that if I was in the room with food, I would gain weight. I should perhaps make clear that I am not “obese,” but with every decade, I seem to put on a few steady pounds. I’ve tried many remedies—however, none seem to work. I honestly don’t think my doctors like it that I have an old-fashioned tendency to avoid carbs when I can. I try to keep that regime of injecting insulin down, as insulin retains the weight. My body may not have been able to use all food effectively in the past, but with the advent of the pump, that tendency had been pretty well eliminated!

I guess I’m thankful for age and the women’s movement that encourage me to accept the woman I’ve become. I thank those who talked me into wearing bright colors and to no longer be ashamed of my body image. Although I’m still more comfortable in casual wear, I love dressing with an artist’s flair! Both actually suit. So if you have a diabetic child, as all so often preach now, go for the individual. I’ve heard some diabetic youth actually skip that insulin shot in order to lose weight! That is, possible hospitalization and death in order to be a stick figure! So, so, so not right. Still, that’s how much weight still matters to many. All flair aside, I have to agree, be healthy! Life is always a struggle, but moments of normalcy and happiness are to be had. Having had Type 1 for 54 years this month, I’m living proof. For the sake of yourself and all of us, hang in there!

Holiday Cheer

If I had not been a juvenile diabetic, perhaps I could have grown into a person who enjoyed food. A happy gourmet cook who made her own pastas, threw large and wonderful parties, and moved around her kitchen with ease and laughter. Perhaps—but I can’t say that I have ever really enjoyed food.

Correction. I enjoyed food as a child—before I became a diabetic. Of course, my diet consisted of foods not considered healthy by today’s standards. (I am from very Southern Illinois, where fried food and pie once reigned.) The enjoyment of food to me was all wrapped up with a warm family feeling, a feeling of security. I enjoyed my grandmother’s kitchen—her fried chicken and biscuits, her new red potatoes with green beans simmered in bacon grease, and her most wonderful homemade pies. From scratch, the woman baked apple pie, custard pie, peach cobbler, and my personal favorite, cherry. My father became the cook on holidays as he basted turkey, or in summer, ribs with his special barbecue sauce. There was also my own mother’s roast beef and carrots, beef stew, and her chocolate cakes. Don’t forget the Christmas fudge! Chocolate was an immediate loss that tortured me.

I had birthday cakes, but I also usually had a party in which I took one bite, and then gave the other pieces away to family and friends. I’d simply learned that this was unselfish behavior, and I think I was just glad to still have parties. I could eat a bit of ice cream then too, its fatty content going into the bloodstream in a slower manner than a sugar rush. (No, people did not worry about sugar making children “high” back then.) At teen parties, I did indulge in salted stacks and chips, of course. In younger days, I was famed for saying potato chips were my favorite food. Certainly not carb smart.

Oddly enough though, the holidays were not all that bad for me. My good mother always made sure there were sugar-free pies available. Yes, she had to make them. No such products would have been found in the grocery stores of yesteryear. In fact, in those days, artificial sweetener was carried in only one in my small town, I believe. The name of it was Sweet 10, and it was liquid. It was applied by turning the bottle over and administering drops. It tasted better than saccharin, also occasionally found here and there in the form of small tablets. No, I remember no sweetener packets in grocery stores, much less on restaurant tables.

There were certainly no packaged products for baking in grocery stores. There were certainly not many diet soft drinks until later. Punch, cocoa or apple cider, the other holiday drinks? No, and when I was young, just “standing around” at parties where I didn’t touch birthday cake, Christmas cookies, or eggnog, and certainly not fruit punch—became socially overwhelming. In addition, I was shy and making meaningless conversation was difficult at best. Furthermore, what to do with my hands? On one such occasion, a high school teacher finally advised on one such occasion that I learn to drink coffee. Not yet an adult, I thought the idea odd. Still, I would never have wanted people plying me with acceptable snacks.

By my teen years, we all heard about the various artificial sweetener and cancer scares, but as a teen, I certainly wanted those diet sodas. (A soda without after taste does not to me, taste right.) Again though, Christmas and Thanksgiving, even Easter weren’t all that big a problem. In the Midwest, these were family holidays, and I had family who got “diabetic recipes” from books, or learned from dieticians how to substitute sweeteners to make passable desserts. Oddly enough, pies seemed to turn out better than cakes. Mom made a good sweetened strawberry shortcake though, which fit in with my summer birthday. I was past the age of Easter eggs or Halloween candy, so no problem there really.

For a growing young woman, Valentine’s Day became more of a problem.  No, “diabetic candy” was not in great supply back then, though when he traveled for work, Dad—my best Valentine—could cart in rare boxes from St. Louis. Very much later, non-Christmas cookies began cropping up in stores. Still, I had and have no interest in baking—I am not perfect, and would certainly have licked the spoon. I guess, except for chocolate covered cherries and ice cream, I simply turned my attentions elsewhere.

Of course, I still like turkey and dressing, too much food on a holiday. I also still like to avoid that sweet, syrupy feeling of too much sugar hitting the blood stream after big meals. Perhaps unlike many a “cheating diabetic,” I didn’t and don’t feel inclined to sneak desserts. When I was young, diets of a large amount of calories were enforced, and I’m afraid I got out of every big meal I could. Oddly enough, during this time when blood sugars were not checked regularly, I did not often suffer low blood sugar from a missed meal.

I think my body was already telling me what many diabetics have since learned—that many do better on several small snacks or meals a day, as opposed to the large meals sending loads of carbohydrates sluggishly through the system, and raising the blood sugar way, way up. I rarely indulge with a whole piece of pie or a piece of Christmas fudge. Brownies have always been nothing but trouble. I’m kind of thankful I became a diabetic so young, as I really feel nothing as others sit around me eating. Yes, by all means, eat cake!

I hasten to point out that I still celebrate holidays. For the sake of family and my Midwestern values, I look forward to them. The only way I can stand winter is Christmas—but I like the lights, the silver bells, and the family and friend get-togethers. Perhaps I should feel lucky that I’m with those who say that Christmas or any holidays are about more than the crassly material and commercial. Especially Christmas seems more about creating warmth and light in a cold world. The same for a diabetic then as anyone else. Children help spread joy also then. The world is new, you see.

Another great thing about the pump and better health is that, though I’m still lonely out here as a person who does not care a lot about food in a world of gourmet cooks, is that I’ve finally been experiencing hunger again. You heard me right. For years, I simply equated hunger with low blood sugar—not fun. Now I’ve actually come to realize at times that I’m hungry—and no, my blood sugars are not out of control. At first, I actually found the feeling odd or even annoying. Now though, I find I look forward to certain meals or most of all, I like trying new foods. An adventurer after all! Perhaps moderate hunger is what causes us to enjoy the cherry rich sweetness of life? Bring on the good cheer!

Touching the Future

November is Diabetes Awareness Month. The diabetes that most are aware of, I think, is Type 2 Diabetes. This is good, I suppose, as the condition has grown to epidemic proportions.

More people are unaware that Type 1 has also increased with great regularity. This condition afflicts children, as well as adult onset victims, but what exactly is the difference? Type 1 is in no way connected to weight or “bad sugar” and diet behavior. It can also not be controlled, except with the use of insulin.

As I was diagnosed after a bad case of childhood flu, I’d still say perhaps some Type 1 is caused by a virus. I’ve met many who’d swear to that and I put myself in that category, not that I was ever listened to as an adolescent. At any rate, it’s hard for me to be certain of how I feel about “awareness.”

During most of my lifetime, I have not given myself shots in front of people. Some today actually consider this an unhealthy attitude, but I was extremely self-conscious about being different, and so medication became, to me, a very private matter. I was a proud adolescent, and I simply memorized the diagrams in the “shot brochures,” the ones picturing the body with certain sections shaded as suitable for injection and absorption. The upper arms and thighs, the hips, and even the stomach are all “fair game.” The diabetic is also told to vary the injection site, to space the injections out say across the leg or down the leg, and then, the child should perhaps move to the other leg.

I’m almost sure I gave my first shot in my thigh since that site had been mentioned and re-mentioned in the literature. Also, when I’d tried to inject my upper arm with the opposite hand, I’d found the reaching over myself much more difficult than one would imagine, perhaps due to my short arms. However, I could reach my youthful, then “good-looking” legs–the same legs I wanted to look good when I wore a swimsuit or shorts, or whenever I sported whatever tan I could muster. No matter what healthcare professionals swore, my blunt needles left marks. I had “tracks,” I thought. At times, I suffered bruising.

I went to college during an age when drugs were turning up everywhere. I was once at what I had been told was a “fun party.” We were out on a farm “off campus,” so many young people getting to know each other, talking under the stars. No it was not Woodstock and no one was naked. Everyone was just generally having a good time. Then the human “stars” arrived, a couple from a popular bar downtown. No names are in my memory, not even clear faces. Just a medium built, muscled guy, with shoulder-length hair, and he walked with a silver-balled cane. I have no idea why he was “the star.” He was wearing spats. The girl, of course, had long flowing hair.

I do remember a while later, in the haze of moonlight, that I climbed a ladder to get on top of the garage. Not one of my usual activities, but I guess I was trying to be “wild” by joining the group that had moved up there. What I saw on the flat roof was the same man getting ready to “shoot up.” What I did was climb back down. The stars reeled overhead. I told those right behind me on the rungs that I was going to be sick, and the way down cleared.

How could anyone do that? This was my only thought. Why would anyone do that willingly to one’s body? Not that any of the party-goers or “cool people” knew then or probably know now much about diabetes. Let’s hope they learned more about life and are still living it. I have no other memories of the night, except that I think I looked for my closer friends again and left soon thereafter. Maybe T1D saved me from the hippie drug scene (nothing compared to the drug scene now). Or maybe just a good upbringing and common sense. I always felt I had to know about what time it was. No losing track of consciousness.

At any rate, insulin pens and the insulin pump have changed and lessened the pain of taking insulin these days. The pump and glucose monitors are not yet, though, totally automatic. The diabetic child/teen or a parent still has to be on top of blood sugar levels, dosages, diet and the like. Believe it or not, a phone app is now helping!

Until the continuous glucose monitors can become 100 percent effective, public blood testing using the finger or arm seems to be more the subject of controversy. And these days, lows not highs are the concern. Most schools have now been effectively prevailed upon to let children blood test right in class, say if they are feeling low and/or if they feel the need to make sure they’re all right before a test. Of course, this was never even a possibility for me when growing up, not that I would have consented to do so really.

Besides the fact that I did not want to be stared at as a diabetic while growing up, I think it’s my Southern upbringing—who would test their blood sugar in front of others sitting down to eat? No, doesn’t sound appetizing—of course, I would never deny someone the right. Still—after ordering at a restaurant, what’s wrong with excusing one’s self to the restroom? If you use an insulin pump at the table, most just think you’re looking at a phone if they even notice. Not that people didn’t or don’t know I’m a diabetic

These days, if in a crowd of busy people, I do perhaps just turn away on an airport bench to test my blood—still, as I was involved professionally in a more business-like atmosphere, hard to imagine the business lunch, sales meeting, work meeting in which I would have thought it socially acceptable to squeeze blood from my finger. Actually, the reason I’m for diabetic awareness is that a cure or more effective methods of treatment seem so close.

Life could be so much easier for the kids coming up. Many are intrigued by the idea of “smart insulin.” This is a dosage that would have to be taken in the morning each day—and then supposedly, the insulin reacts chemically with various levels of glucose throughout the day automatically. We’re back to one shot a day! Not sure about the blood testing.

My favorite so far is the discovery/manufacture of beta cells by Harvard professors. This is touted as a cure, though actually it seems to be simply a very much improved treatment of T1D. The encapsulated beta cells are in some sort of bandaid-size implement that can be inserted into the backside of the diabetic every two-three years, and these cells then work much the same way as the cells within a normal pancreas. Again, not sure how the glucose testing would still go, but seems like it would eliminate the needs of injections and the like?

The reason to be involved in diabetic awareness now is that there is hope. Actual hope that healthcare can not only keep a child alive, but the very real idea that healthcare—rather than leading to only more healthcare—will one day actually be able to provide cures for various diseases, diabetes among them. Yes, if one tests positive for the possibility of developing T1D these days (remember all those tales of inherited tendencies)—tests are now being run on possible vaccines. Could the ravages of that virus have been stopped in my once supposedly pre-disposed body? Maybe now, or maybe soon!

I have survived a lifetime with T1D by not letting myself even consider life another way. Yes, best to live and make the best of what I had, not pine for a future that could not be mine. I still don’t pine really—I’m 65 years old, and I find a way to do what I need or want to do (now that the need for health insurance no longer binds me). I do now, however, seek to touch the future—for the younger people, could not life be made better, more affordable, less of a burden or a pain to the body? That’s what I think diabetic awareness can lead us to: touching the future.

All together now, no resigning ourselves. Healthcare is good, but how about freedom from such involved healthcare on a daily basis or how about a cure? Let’s touch the future.

Keep on Marching

JDRF T1D One Walk, 2015

Last Sunday, October 4, dawned cold and windy. Gray. It matched up with what I remember at the time of my diagnosis at age 11. I was diagnosed in January, and so of course, it was colder than last Saturday. Still, I remember the gray, and no, I’m not a fan of winter.

Last Sunday was different, though, in that the air was filled with exuberant children and teens, and yes, adults like me. The air was full of hope. I even made it through the 3-mile walk, thanks to partner Karen Zichterman, and the little boys and girls who kept running ahead of us shouting, “Keep walking! Keep walking.”

Type 1, these days, seems so near that cure—or at least very improved methods of treatment. Easier and more effective methods:
• the artificial pancreas (a system of external devices plus a phone app),
• “smart” insulin (the new drug actually can regulate itself to the sugar in the bloodstream),
• the encapsulation of insulin-producing beta cells (eliminating the need for transplant drugs),
• prevention and a further biological cure.

In the “old days,” the insulin syringes were made of glass. I kept mine in a glass jar filled with alcohol. The needles had to be screwed onto the syringe, and the needles were blunt by today’s standards. Insulin was made of beef or pork extract and it had to be refrigerated. I could not attend a single slumber party without toting along an embarrassing load of paraphernalia. The glass syringe clanged inside its bottle as I walked into each and every front door, or I always imagined it did. For the rest of my painful adolescence, self-consciousness became a constant state of mind.

I took a shot once a day, often without too much thought at all, for more than twenty years. Then there were new medical findings, and a new doctor in a new town talked to me about taking two shots a day for better control. I nodded my agreement, then left the office and did not go back. (I’ve heard that many diabetics have had similar reactions.) After twenty years—by then I’d had a minimum of seven to eight thousand shots—why shrink from a few more? Why such a fuss? Because to me, the suggestion added only “insult to injury”–the injury that has been done to the body, and therefore, the soul of the diabetic. A humiliation of the flesh.

Furthermore, the blood tests of the old days were even more of an ordeal for this child. Doctors insisted I have a blood test at least once a month, and I dreaded them as I have dreaded little since. The tests entailed only what we think of today as a simple and ordinary blood test. At any rate, the blood tests back then also necessitated a visit to the lab at the local hospital, meaning my poor mother had to drag me out of bed very early in the morning on the designated Friday for my blood sugar test.

In my mind, the drive to the hospital always takes place in winter. My mother and I ride through streets lined with bare trees under skies of gray cold to pull into the parking lot behind the emergency room. The hospital corridor is narrow, dingy, filled with garish light, and I feel as if I can hear the clock on the wall though its ticks are not audible. My mother and I sit and wait, and wait, and what I do hear is the clatter of needles and test tubes inside the lab, as well as the most hated sound–one I can pick out to this day—the snap of rubber tubing.

The problem was, is, and will continue to be that I have no good veins. I did have one vein that sometimes worked in my right arm, and my favorite tech seemed to have the most luck in “hitting it.” However, if “old faithful” just didn’t seem to be pumping a blood sugar day—the ordeal that followed could only be called a fishing expedition through the flesh of a child with a very long needle.

Not so with the children of today. Blood glucose meters for the fingers, continuous glucose monitors, and the insulin pump have made all the difference. Research has helped. Of course, I took several years to get on the pump—such was my distrust of medical personnel and pharmaceutical companies. In the days of my introduction to the pump, I tried not to be shocked at the size of the needle I had to use to get the miniscule tubing into my stomach, the insulin into my system. Not to mention, the purple bruising shocked even me, the old-hand.

Yes, I think all diabetics want “less sticking” please. I am a huge fan of the pump as my health has improved and I feel so much better. Yet I know many who don’t choose to wear a continuous glucose monitor, in addition to the pump, due to the fact that its use still means another device that must be inserted into and worn on the body. The reason I say I “walk for the kids” is so that one day less invasive methods can be found, methods that will not discourage adolescents and young adults from taking care of themselves. I favor methods such as the “smart insulin” or the encapsulated beta cells that can be fit into the body perhaps as little as every 2-3 years.

However, I’ve also realized, I walk for “the parents.” One of the most touching remarks I heard at the walk was from parents who admitted to having not slept for a whole night since the diagnosis of their child five years ago. Yes, everyone is afraid of that low at night that can signal danger for the sleeping child.

Right after my diagnosis, I’d avoid bedtime as long as I could. I did not want to lie on my bed and stare at the ceiling night after night. I can still remember the white squares of my bedroom ceiling as I’d count them over and over, one by one. I had trouble sleeping. My family lived on Main Street in our small town, U.S.A., and so I also listened for the soothing sound of the passing cars. As their lights lazily swept the ceiling, I’d pray to fall asleep. This was how I became twelve years old.

Of course, in the days when diabetics took just one shot daily, perhaps my insomnia was a result of high blood sugars—who knew back then? I did often awake during the night with the feeling of low blood sugar, and this became the terror. What if one night I didn’t wake up? Today, as insulin is so much more effective, and yet so many now fail to feel those lows coming on—of course parents are beside themselves over their child’s safety even while home in bed!

Too much fear, and yet the younger ones are so full of hope that they fill me with it. Doing well on their pumps, they are confident, as I wish I had been. As to the continued problems, I’d like researchers to keep working and to echo the children running ahead: Keep walking! Keep walking!

Contribute to JDRF One Walk

Cinda Thompson, of Peoria, has had Type 1 Diabetes for 53 years and counting. On October 4, 2015, she will be among thousands of walkers at the Juvenile Diabetes Research Foundation One Walk, Sun., Oct 4 (10:00 AM), Civic Plaza Park Levee District, 400 Richland Street, East Peoria., IL 61611.

She is part of the Z Team, along with Karen Zichterman of Chillicothe, whose son was also diagnosed with adult onset juvenile diabetes (Type 1), an immune system disorder. The local JDRF has contributed thousands of dollars to eliminate this difficult, life-burdening disease. Nationally, JDRF has contributed over $1.9B to T1 research, $98M in 2014: Type One to Type None.

Cinda was diagnosed in what she calls “the dark ages” of treatment of one shot of long-acting insulin per day, along with a diet of no sugar. Blood sugar testing as it exists today was not possible, and though high blood sugars were feared, Cinda assures that low blood sugars were and are feared perhaps even more by those who suffer from Type One.

The Juvenile Diabetes Research Foundation, counting many parents and children among its members, is very much responsible for helping to fund further help. Cinda has been awarded with the Joslin Research Center’s 50-Year Medal, as well as that of Eli Lilly, original company founders of insulin. She is happy to speak with any individual group or organization concerned with facing a long-term illness. Meanwhile, Cinda attributes modern medical advances like faster-acting insulins and the insulin pump, as well as more frequent blood testing, with improvements in her health and outlook.

Every contribution to: (http://www2.jdrf.org/site/TR?fr_id=5351&pg=team&team_id=179756&ref_px=9938709) is working on:
• the artificial pancreas (a system of external devices plus a phone app)
• “smart” insulin (the new drug actually can regulate itself to the sugar in the bloodstream),
• the encapsulation of insulin-producing beta cells (eliminating the need for transplant drugs),
• prevention and a further biological cure.

Any medical advancement can better the life of many a child and their worried families. Cinda has come to believe an actual cure might be possible. As grateful as this one woman is for her life, she does not want anyone else to have to suffer isolation, confusion, disillusionment, or even the financial challenges her condition has presented her throughout the years. This is why Cinda, the Zichtermans, and so many support JDRF—these people are involved with hope. A cure is possible. Type One to Type None!

Cinda Thompson

The Cash Cow

I suspect that many diabetics or their family members are afraid of poverty issues. From my diagnosis in January, 1962, until present—how much money have my parents and I already spent on diabetic supplies, insulin, and new inventions that promise to make me better controlled, though never cured? I do want to thank those responsible for the breakthroughs that have bettered diabetes care, and therefore, hopefully, the lives of diabetics.

 
However, a simple perusal of the internet tells anyone that there are many out there who fear our diabetic condition is perhaps a bit too lucrative to warrant a cure. There even seem to be diabetics who fear a conspiracy! After all, hospital personnel, medical research firms, pharmaceutical companies, health insurance companies, and perhaps even malpractice attorneys, not to mention the lobbyists of all concerned, all of these groups depend upon my condition for an income, do they not?

 
As to pharmaceutical companies, I am grateful for many of the improved products. However, what about the ones the diabetic uses that come out, with not only an outlandish price, but those that increasingly come out to be followed later with “recall letters” due to some functional problem or other. Shouldn’t that be shocking? Shouldn’t that be a shocking problem to even those who are not diabetic—the fact that medical equipment is found to be shoddy, if not totally non-helpful or nonfunctional? Are doctors then protesting or are some of them on company boards and/or do they hold company stock? Have most of us noticed the offices and hospitals overrun with pharmaceutical agents, and who holds their stock?

 
Do diabetics dare speak up? Can some arm of government fine, not so much the research arm, but the manufacturing arm of medical businesses that seem not so concerned with quality control and/or the patient? Or why should such fines and/or corrections be passed onto the consumer; that is, the patient? Just speaking of justice here. Actually, I am quite in favor of the companies who help diabetics that cannot afford expensive products for their care. However, is that free care coming out of a company pocket and/or again, a consumer or diabetic/patient’s pocket? The poor helping the poor, in other words.

 
The question becomes why, within all the parties there are to blame—the medical establishment (doctors, hospitals, and subsidiary businesses), pharmaceutical companies, and insurance companies, the patient is yet again made to feel like the victim. I am not only ill, I cannot afford my own care, sometimes even when I do work and work hard. God forbid, I should want savings for my family.

 
What of the T1D diabetic who, before 2014, had no health insurance, for whatever reason, and those were turned down for that “pre-existing” condition? No one in our mainly capitalistic country minds a “modest profit.” Still, why do I still have nagging suspicions that certain “higher management” or “leaders in the insurance industry” are living well at my expense?

 
Speaking of wealthy CEOs does bring us to the cost of health insurance. Before recent changes as to pre-existing conditions, as a diabetic, I was always asked by health insurance agents how much insulin I took or told point blank, “We sign up no diabetics.” More and more, especially on the matter of health insurance premiums, I’m grateful to know that diabetics over the age of 26 can supposedly get health insurance even if laid off or unable find a full-time job. After all, although a person like myself has always worked full-time and received company insurance, I was laid off when I was over 55. Luckily? I was allowed to purchase the same health insurance I’d had from a branch of my old employers. $1,000 a month. I paid.

 
At any rate, as I’ve worked exhaustively for many years in my life, I have noticed the trend of premiums going up and up. Also, I have learned while working and supposedly having “good insurance,” that the deal seemed to be that the pharmaceutical companies try to get a health insurance provider in their corner, thus giving the insurance provider lower prices for a whole lot of business, and/or vice-versa That is, the insurance company gets a drug company in its corner, again giving itself savings, thereby more profits, but meanwhile, the company insured must use the “drug provider.” I’ve never understood as an insured person what people were talking about as to choice in healthcare. The insurance company was or is chosen, the drug providers, the hospitals, and often, the doctors were then approved or no. I’m afraid my choices were all limited.

 
As a result, what I noticed was that no one had much choice as to a career either then—how good is it for our economy that people are working solely for health insurance? How good is that for a company even? I’m not even sure some of the rich have so much choice—depends on how rich, I guess. Yes, the lesson medicine teaches these days, I fear, is that one is rarely rich enough. Also, never quit a full-time job with benefits, no matter how bad the situation is.

 
More puzzling to the hardworking employee is the large company that increasingly divests itself of insurance oversight. Let’s say there’s a patient from the last two or three decades that does manage to stay employed with a company, while paying pretty high group health insurance premiums, various co-pays, deductibles, and so forth. However, what if that hard-working employee, temporarily a patient, then has some problem with a claim and goes to a Department of Human Resources or Personnel Office, only to be told that the department no longer acts on the patient’s behalf—no, no, that’s all up to you, the ill person! The Department of Human Resources no longer “fools with that.” My, my, my—that budding career you have is great isn’t it—as long as you and your children can stay on your feet and working as long as humanly possible.

 
Certainly, as the average American worker, I could say that if I wasn’t sick already, I certainly could have been made sick by having to argue with my insurance company over what was covered and what wasn’t. Furthermore, I’m sure you’re already tired of hearing me rage. However, if you are a lowly employee, or worse, if you are only “a wife,” you are only going to be able to talk with a call center as to an insurance claim. Perhaps more shockingly, you’ll find yourself talking with “a temp” who can do nothing for him- or herself, much less the patient who pays the premium.

 
At least one person who was probably fired from a health insurance company in a taped call once sadly told me: “The employees here (in the insurance company) get no health benefits at all!” No wonder attorneys are needed by individuals involved with healthcare. Heaven knows, all the companies involved have legal counsel I assure you. Not to mention those figuring out what “the average cost is” as opposed to what the insurance company is willing to pay. All I know is what most patients know—profits within even the companies in which we are employed, rarely go to us. One is always chasing that brass ring just out of reach. Sad, when that brass ring is not a promotion, a higher salary, but of all things, a chance at relative wellness. How many American workers do not suffer undue, crippling stress? The idea being, what about that Hippocratic Oath: First, do no harm. Of course, perhaps the medical industries do not take such an oath. Still . . . . . .

 
Now I worry that I have read that some want to cut diabetes supplies as offered by Medicare. I’m delighted to learn that recent health laws not only give diabetic children hope for the future, but they have in a very republican way offered grants to states who can experiment and find ways to keep health care costs down. (I was continually misinformed about this by one former a local Congressperson.)

 
Meanwhile, much of the research sponsored by the Juvenile Diabetes Research Foundation sounds very plausible. Of a number of clinical trials, I like the experiments on the implantation of encapsulated beta cells (no transplant drugs needed), all in a strip the size of a band aid under the skin; also, “smart insulin.” It adjusts itself to the sugar in your bloodstream. None of this is science fiction anymore—within the next few years, all might be so. Type 1 Diabetics, many children are funding their own cure! Isn’t that a joy and inspiration?! I feel reborn. Surprisingly, I feel younger these days, not older. Besides, I don’t feel any of us should die just to benefit the already wealthy. Don’t do it. Live and leave our poor scarred earth better in some small way.

Nicholas Stearns

His parents gave me permission to re-post the last blog, Lo! Lo! Lo! for their son. Nicholas is from the Quad City area, but he passed away during the last year, having a blood sugar of 15 at the time taken. At 27, this young man was out trying to live his own life, the life he wanted in Texas: new apartment, job instructing. I was the same at his age and beyond. Put simply: Type  Diabetes needs to be cured, and considering so much recently in the works, there is no reason it shouldn’t be.
To read this post, please click HERE.

Lo! Lo! Lo!

The first time I experienced low blood sugar, I thought I was dying. I was an eleven-year-old child still in the hospital being “stabilized” after my initial diagnosis of Type I diabetes when I felt the “rush.” This rush that takes breath away was like a free fall.

 
Imagine the face of a sheer cliff, and though the “fingertips” of the brain scramble frantically in search of a hold, there seems to be nothing to catch onto. Space and air. Internally, there seems to be some dramatic drop in the barometric pressure of each cell in the body. The diabetic is falling or sinking and the insides become weak, the mind distracted. At least, I finally managed to find and push the nurse’s button.

 
I want to reassure people that I consider myself a lucky diabetic because I can actually feel a low blood sugar coming on. In addition, if I am having low blood sugar during the night, I automatically wake up. I have been informed by fellow patients that those new to diabetes have a harder time feeling a low coming on; thus, the danger. I have heard so many stories from parents whose children are suffering lows at night, but not waking up, that even I grow terrified for all. As I have grown “tighter,” I have noticed that lows can come on more suddenly—these days, one just feels disoriented and in some “wrong space.” It’s a “not tracking” feeling. It’s just so important to remember, diabetics often need to eat sugar. Pronto!

 
Normal blood sugar levels are said to range between 70-120. Glucometers for testing blood sugar were not available in the world of my childhood, but the lowest blood sugar most today’s blood testers will measure is 30. Thirty and then my machine flahes: LO, LO, LO. Too much insulin; the diabetic is overdosing! O.D.! A diabetic then needs to get his or her sugar level up immediately. Or what?

 
If glucose tablets or fruit juice are not administered, what can follow all too quickly is a loss of consciousness, later convulsions and even death. Glucose tablets can be purchased in any drugstore. The tablet dissolves immediately in the mouth, and therefore, sugar bypasses digestion, immediately hitting the blood stream. However, any sugar can do the trick, though orange juice is usually recognized as the fastest home remedy, or a glucagon shot if the diabetic has passed out. (Glucagon emergency kits are now available for home use for the diabetic today; again, not in my childhood.)

 
I have no real memory of my first reported low blood sugar outside of a medical setting, but to this day, I feel embarrassment if I remember the tales I’ve been told. Evidently, I’d been playing at home on the front porch swing when I turned violently on a young girlfriend. I was told neighbors actually had to help drag me from underneath the swing then as I’d screamed quite clearly that I WAS NOT going back to that hospital! I was also told I became violent in the emergency room, slapping at nurses and knocking a urine specimen across the shiny hospital floor. The story of my behavior mortified me, and I was sure that in our small town, the story of my “fit” was spreading like wildfire.

 
Childhood friends have since shared with me a couple of lows that turned into convulsions and/or a frightening event of some sort. Frightening to them; fortunately, I have no memory of these times. Still, I usually came out of episodes without hospitalization. Just a little bit of sugar. Not to worry, I have suffered nothing this serious since very young adulthood. The point is that such episodes are socially embarrassing—very important to young adults and teens.

 
Still, it is not uncommon for the public to think that diabetes is caused by eating too much sugar. Not wanting anyone to make a big deal about policing my sugar, I used to try to bear low blood sugar panics until I could manage to be alone. However, there I’d be, smack dab in the middle of a quiet study hall or a church service as the telltale weakness and sweaty flush of heat crept over me in a place where others were not even allowed to chew gum! I just so did not want to feel be noticed, even envied as I struggled with crackling candy wrappers. Early on I actually thought it better to just sit quietly and concentrate on NOT sweating or fainting. I must look and act “normal.”

 
To all sugar police: Never chastise a diabetic for eating too much to overcome a low blood sugar. The medical advice to take glucose tabs or drink half a Coke and then sitting for twenty minutes will not do it for most. This is because my reaction to that advice is, “You have got to be kidding me!” You want me to sit quietly while I’m disappearing behind my own face? Thank you, but I don’t want one bite, but the whole candy bar; not one cookie but a dozen and not just one sip of orange juice. I’ll swallow the whole glass. My favorite sugar is chocolate or cookies, though these take some time to digest and enter the blood stream. A good thing about an insulin pump is then, that the diabetic can also compensate for the intake of way too many calories.

 
Diabetes is a serious illness. Diabetics can live a “normal” life, and yet that daily life often conceals the real possibility of sudden death. Still, the vast majority of children and adults do manage to stay “in control” and save themselves and others. To this day, I am told I have remarkable powers of concentration. People say I portray “calm” itself. I’d say rather that I see no use in hysteria. Mine or yours. The child I was learned early on, and the adult remembers that hysteria is deadly or silly. Most diabetics, and many other “victims of illness,” are also simply not desirous of pity and we try so hard not to need help. Anything, to retain our self-respect as “healthy” human-beings, “cool” teens, or self-assured and proficient professionals. Maybe if our society could better encourage rational adults to use the words “help me,” we’d have more happy endings to stories. As a diabetic, I have always felt as if my life has been spent in trying to keep “my balance.” Balance in more ways than one! And I wish for the children suffering now that they could enjoy a life more carefree than mine has been.

 
I can see how insulin delivery was the most natural or sensible thing to study early on, but are there not also other methods and areas to study on the way to finding a cure for diabetes? I’m not enough of a scientist to know. Just asking and willing to listen and learn. JDRF (Juvenile Diabetes Research Foundation), among others, is sponsoring so many far-reaching treatments, including a biological cure. Of course, it’s a relief not to have cancer and as good as my life has sometimes been, I just don’t think one more child should face my path: managing T1D for 53 years and counting. The new motto: Type One to Type None.

Hi! Hi! Hi!

Place the head of the lancet against the tender tip of a finger. Press the button so the needle can plunge forward into the flesh of the fingertip. I have never witnessed the beginner who did not flinch. However, if one has been successful in penetrating the skin, a drop of blood springs from the tip of the finger. If a drop fails to immediately appear, then the site must be “milked.” That is, squeeze the flesh until the blood drop grows big enough. Then place the drop of blood on a test strip and push the “countdown” button. At the end of thirty seconds, the diabetic’s near-present blood sugar can be read.

 

Many diabetics do actually live in fear of their glucometer (blood-testing) paraphernalia and the sudden pain of the tiny jab, then the sight and the messiness of blood. Even worse, though, are the numbers that are liable to flash up accusingly—211, 250, 310 (Hi, Hi, Hi) or 36, 42, 54 (Lo, Lo, Lo). A diabetic can function on fairly high blood sugar levels; however, a normal blood sugar is usually considered to be 70-120. So as the individual numbers appear, the diabetic can feel guilty again, guilty again, guilty again.

 

Besides, doesn’t it seem like the medical profession just love to “stick pins” into the diabetic? Stick, stick, stick! Still, I do appreciate blood sugar testing that is far, far better than it used to be. That is, blood sugar reading that can be checked more often and insulin levels, using faster-acting insulin that can now also be more easily adjusted to suit the results. Also, the diabetic is now actually allowed to perform that blood sugar test and mete out that needed insulin or sugar. In my childhood, at least to me, no regular or shorter acting insulin was given out. It was all one shot a day and eat no sugar. Were we all walking around high? I expect often—at least after those large, holiday meals. (At least, I had a tendency to want to take a walk after those or any Italian dinners.)

 

In the past, there were not even A1Cs (tests for blood sugar average over previous recent months); rather a diabetic’s regime was actually judged due to maybe one blood test a month in a medical setting! (As I had no veins, not pleasant.) Even worse, in the not-so-distant past, diabetics used to have to test their own urine to get some sort of daily sugar reading. As a child, I was given a small, plastic urine testing kit. It contained a test tube, a dropper, and a bottle of what was known as Clinitest tablets. I think it was five drops of urine and ten of water needed for the test. I’m not sure, but after this concoction was gotten into the test tube, I was told to add one of the toxic blue tablets. The mixture would then fizz up into the test tube and “boil down” into a color. Navy blue stood for negative, no sugar in your own urine. Dark green and various browns meant the yellow urine held varying low amounts of sugar. Bright orange—well, that horrifying shade signaled 4+, 4+, 4+, too much, way too much sugar in the urine. Again, guilty, guilty, guilty, must be your fault, your fault, your fault.

 

More to the point, what girl on the brink of adolescence wouldn’t rebel at the urine process? I considered the whole process not only embarrassing but disgusting—the very idea! More importantly, the tests were certainly not enhancing to a young woman’s growing sense of herself as attractive to the opposite sex.

 

And here come the points of this particular blog, ones that I think can be gathered from my activity: by definition, and recent developments aside, a diabetic’s blood sugar is simply not going to be perfect. True, with recent continuous glucose monitors (CGMs or sensors), now inserted once every few days in much the same way as the insulin pump, the diabetic can get much closer to what I heard someone say was “a smoother ride” through life.

 

Of course, 1) yet another stick of needle into the body is pretty unwelcome, no matter what one’s age—but to a child? A child on a continuous basis? Say, we’re inserting on a certain day: one stick for a glucometer and then we do some taping; one stick for the insulin pump and then we do some taping; then we test our blood sugar to be sure or to calibrate (check our tester’s correctness) every few hours, not to mention if the diabetic, a parent, a nurse/teacher at school wants to check a child’s blood sugar for a “hi” or a “lo” during the day or while sleeping—is it any wonder that the medical professional or a caregiver can at times be seen as “the enemy”? The patient can’t just see things right amore—pain and “I’m trying to help you” get all twisted up. Give to JDRF, if possible, an organization for diabetics trying to pay for their own cure, often on behalf of children.

 

2) As by definition, the diabetic can’t be quite perfect, what does all this trust in numbers do to self-esteem? Yes, I know, I’m too high. Again. Yes, I had a lo. Again. When my own numbers are on target, and indeed, my A1cs are usually quite good—I always thank whatever gods that be, that I have a brain and can at least figure what some numbers mean and/or what happened in some given unusual situation that resulted in “a bad time.” Note: At least in my experience, having “a cold” and/or being “stressed to the max” creates a high. I don’t have to eat a piece of cake! Again, only my personal experience. I can’t speak to yours. My point? Be less judgmental, and yes, be careful. In the giving of insulin, I’ve found erring on the side of caution best as aiming for perfection can be dangerous?

 

3) My last point, and I expect one minor to many, is that even people with “a disability” do not lose the desire to be attractive and yes, I do think this has to be considered. In some ways it has been, what with all the paraphernalia, needles, diets, pump holders, and exercise regimes designed for the diabetic. However, I know personally that advice like “Don’t drink beer when you’re with that young man” never worked with me. Nor did advice on what to show and what not to show as far as dress went. Just sayin’ and I don’t mean to make readers uncomfortable about their own children or themselves. In each family, all must be determined according to personal sexual or spiritual values. However, I don’t think the desire to be attractive can be ignored. Sex or even being physically competitive, yet again. Gotta look good for the job interview or on the track, right?

 

My final point, though, is I don’t want anyone to have to make the journey I have made during fifty years now with diabetes. No one. If I could spare you, I would. Of course, I have about the same power I had as a child. All I can say is: Let’s live on. Something might happen. Keep working, keep insisting, changing, hoping or praying. I want to encourage not just diabetics, but anyone with a chronic illness, to do your best to live on. Don’t die outside or inside. Live and prosper! Maybe one day, we’ll all “make it,” imperfect though we are.